It's been a rough road...

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I_Am_Hopeful

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10/2019
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GA
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Hello everyone, my name is Darius.
On Oct of 2019 my Mother had been diagnosed with ALS after many months of thinking it was carpal tunnel among a few others.

I had plans of moving out (finally) before all this started...and my Mom told me to go and live my life. I couldn't not knowing all that would happen within the coming months.

That's when COVID hit and we were licked down in our house for months. I didn't want to let my Mom catch this unknown disease...but what was really shocking and scary wasn't COVID...it was watching my Mom slowly lose her ability to walk by herself, cut up her food, even properly take a shower without assistance. Sometimes I try to be patient but knowing what she is going through hurts me and when I try to help do it my way she gets frustrated and so do I.

It feels like a constant strain on myself mind, body, and soul. Somedays I wish I had run away when I had the chance...but my little sister was in 11th grade and I couldn't leave her with all this to deal with.

I could go on and on but I'm sure I'd be telling my life story. I am trying to seek professional help and try to keep myself sane...


Has it been this hard for anyone else to put their future plans on hold? I love my Mother to the moon and back, but I wish this never happened and as the oldest of the family It's my duty to be there for her like she has always been for me.
 

lgelb

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Hi, Darius, welcome and sorry you are here. What you are feeling is very common. We all want to do the best by our loved ones, but they are still the same people they were before ALS, with different points of view and ways of doing things. So, it can be difficult to help them in the way they want to be.

As to putting your plans on hold, there are probably ways to further them while still being a good caregiver. For example, I stopped working full-time but continued consulting and publishing to some extent, including pro bono work with a more flexible timeline. Not knowing what your goals are, you might be able to take some online courses relating to your field, attend seminars, do projects on the side, volunteer, etc. as well.

No one could wish this happened and no one could be happy that it did. That is no shame at all. That some good could come out of it does not change that. Do not put that on yourself. But if counseling can help, by all means, take advantage. The stronger you are as your own person, the more creative you will be in finding ways to help her in the ways that mean the most, which are not always the big topics of conversation.

Whether yours is the kind of family that says it directly or not, you are doing a fine thing. So thanks for stepping up for your mom and family.

Best,
Laurie
 

Carolina76

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Joined
Jul 28, 2020
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Reason
CALS
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07/2020
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NC
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Kings Mountain
Yes it is so very hard. I feel like I can't keep up. Most of the time my mind is spinning out of control with a million thoughts along with everything that I have to do and making sure I get it all done. I'm tired and our ALS journey is just starting. My heart cries but the tears don't have time to make it to my eyes. At night when I finally get to collapse in bed, I'm so thankful that I have done a good thing.
 

affected

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Apr 26, 2013
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13,195
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lala land
Welcome to the forum.
I saw a counsellor regularly and took an antidepressant.
I felt like I was constantly screaming inside my head. The antidepressant took that screaming away - I still felt everything, I was still incredibly sad, angry, horrified etc. but I could cope with things.
I also talked a lot here and in a FB group for carers.
So we get it - this is incredibly hard, but there are strategies that can help you.
 

Meicat

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Feb 24, 2021
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CALS
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State
FL
Hi Darius, my name is caitlin and I am so sorry. I am experiencing similar emotions. My dad was recently diagnosis and I am trying to graduate college and I was actually living in a different state about to start my adult life and had to change course and come back home. If it would help to talk to someone, I can give you my number. I know how hard it is, but I have found some things that help me stay a little bit saner, while dealing with my life responsibilities and being a care taker. If I could offer any advice to you or just if you need someone to listen to you, I would be more than happy to help out. It’s a devastating disease and it helps knowing your not alone.
 
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